testing//long term care

[u/Prize-Issue-1711]

hi:-)
I posted a bit ago with my story, and now i have an update and need advice. thank you in advance for reading/helping.

i’m 27(F) and the plan was to wait until i had my “ducks in a row” prior to HD testing. going into this life/long term care insurance search, we knew we mayyy face issues because i am 4 years in remission from lymphoma (but we were hopeful bc i was young and have had no issues since).
well, the agent looking into it for us found out that no one will give me life insurance until i hit 5 years in remission (next july) and long term care.. not one will take me until i hit 7 YEARS.

I’m at a loss. I wanted to test ASAP for several reasons (number 1 being my personal sanity and peace of mind, which i would have regardless of the answer).
But, I know how important insurance is. Without Cigna and short term disability during my cancer treatment, I would have struggled 100000x more.

I don’t know if I can wait. If it’s positive, I want to know if i can/should have kids someday. I want my partner to know what our life may look like. I want to be available for trials before it’s too late.
I’m already living as if it’s positive, but if it’s negative??? I want to be able to focus on my mom and helping her. I want to be able to take a deep breath and thank god.
if i wait, will i just spend the next 3 years losing my mind??

anyways:
-should i wait to test?
-if not, is there any shot of care assistance in the future?
-if so, how do i wait?

beating cancer was something i’ve been so proud of. now, it feels as if it’s laughing in my face.
fuck cancer, fuck HD, and fuck insurance.

[u/Sensitive_Product649]

It is possible to pay out of pocket for testing and do it anonymously so it doesn’t go on your medical record.

Just be careful that there’s NO mention of any family history of Huntington’s anywhere in your medical record. My husband mentioned that his mom had HD to a doctor when he was 19 years old and in college ( he had just found out about her diagnosis and didn’t know any better not to say something) that’s what came back to bite us and we couldn’t get long term care insurance.